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データ収集

私たち研究とデータ収集への取り組みは、WFH研究・データ収集プログラム(WFH Research and Data Collection Program)に集約されています。このプログラムには、年次グローバル調査(Annual Global Survey)、世界出血性疾患レジストリ(World Bleeding Disorders Registry)、遺伝子治療レジストリ(Gene Therapy Registry)、およびこれらに付随する教育や能力強化プログラムが含まれています。私たちの目的は、各国代表患者会(NMO)や血友病治療センター(HTC)が能力を高めるためのツール、出血性疾患患者のデータ収集の枠組み、ケア向上を目指す研究や権利擁護支援に活かす収集データの利用について、教育やトレーニングを提供することです。

年次グローバル調査

年次グローバル調査は、WFHの各国代表患者会(NMO)を対象とした年1回の横断的調査です。これには、血友病(PWH)、フォンウィルブランド病(VWD)、まれな凝固因子欠乏症、遺伝性血小板障害を持つ人々に関する国レベルの人口統計データや治療関連データが報告されています。
2021年度グローバル調査のデータ収集が正式に開始されました。現在、2021年度グローバル調査のデータが収集されています。2021年度グローバル調査に関するご質問やご意見は、[email protected]にメールでお知らせください。
重要な日程
データ提出期限 5月31日
データおよび人口統計委員会による事前審査 7月
国別データの最終検証 7月30日
年次グローバル調査報告書の公開 10月

2020年WFH年次グローバル調査(AGS)報告

2020年度グローバル調査では、計120カ国からの回答によりPWHに関する人口統計データおよび治療情報を取得しました。この報告から、世界で39万3,000人を超える出血性疾患患者が診断・報告されていることが明らかになっています。さらに、ノボセブン®やファイバ®のほか、VWD治療製剤による治療を受けている患者数を示す表が、新たに追加されました。WFHは、このような重要なデータを収集してくださった各国NMOのご尽力に感謝いたします。   プレゼンテーション、出版物、その他の研究資料において年次グローバル調査データを使用される場合には、WFHのクレジット表記をお願いします。また、研究者のみなさまがWFH年次グローバル調査データをご使用になる際は、WFHにご連絡をお願いいたします。年次グローバル調査に関するご質問やご意見は、[email protected]にお願いします。
WFHは、年次グローバル調査データを要約するため、双方向性で伝わりやすい視覚化イメージを制作しました。このシステムにより、分析やレポート作成がさらに簡単で迅速に行えます。WFHの新システムを使用して、年次グローバル調査データのグラフを閲覧・ダウンロードしてみてください。   詳細については、[email protected] にお問い合わせください。

WFH年次グローバル調査ミニレポートは、年次グローバル調査データのさらに詳細な展望や背景情報が得られる支援ツールです。

世界出血性疾患レジストリ(WBDR)

WBDRは、血友病患者(PWH)に関する標準化臨床データを収集している唯一の世界的レジストリです。参加している血友病治療センター(HTC)の大規模ネットワークにウェブベースのデータ入力プラットフォームを提供し、データの収集・管理を行っています。WBDRのデータは、エビデンスに基づく権利擁護支援、研究、診療の改善にとって非常に貴重なものです。

WBDRへの参加

WBDRは、世界中の血友病患者に対するケアを向上させる重要なデータ収集ツールです。

WBDRに参加するには、以下に示す条件を満たす必要があります。

  • Web上のデータ入力システムに接続するインターネットへアクセスできること
  • 患者の個人データをレジストリに入力可能な担当者がいること
  • 長期にわたりレジストリに患者を登録し、各患者の来院時にフォローアップの質問を行う意志があること

WBDRへの参加に関心がある場合、[email protected] にご連絡ください。所属機関または厚生労働省から倫理承認を得るための手続きについてWFHからご案内します。

HTCが倫理承認を受けて後、データ入力担当者は患者登録を開始する前にWBDRデータ入力研修を受ける必要があります。

国際データ統合プログラムにより、既存の血友病レジストリから得たリソースの統合が進み、既存の患者レジストリからWBDRにデータを転送することで既存データを最大限に活用することができるようになります。このプログラムは、自国のデータを共有し、WBDRに自国のデータを反映させることで、この世界的な取り組みに参加することを希望している国々が利用できます。詳細については、WFH([email protected])にお問い合わせください。

現在のプログラム協力

  • チェコ血友病プログラムレジストリ(Czech National Haemophilia Programme Registry:CNHPR):CNHPRは、チェコ共和国内の小児血友病治療センター(8カ所)および成人血友病治療センター(8カ所)から全国のデータを収集しています。POC(概念実証研究)試験の一環として、2018年のCNHPRデータから得た匿名化された最小のデータセットをWBDRに取り込まれました。この成功を受け、2019年から遺伝子検査、血友病関節健康スコア(Hemophilia Joint Health Score:HJHS)、併存疾患、入院に関するデータが取り込まれるデータセットに追加されました。CNHPRのデータは、引き続きWBDRで毎年更新されています。

 

  • タイ血液学会の遺伝性出血性疾患レジストリ(Hereditary Bleeding Disorders Registry :HBDR):2021年、タイ血液学会(TSH)のHBDRはWBDRとの協力のもと、2020年および2021年のデータをグローバルレジストリに統合しました。TSHのHBDRとWBDRの連携により、血友病Aおよび血友病B患者300例分の最小・拡張データセットが新たにWBDRに送られました。HBDRからWBDRへのデータ転送に関する詳細な情報については、こちら(英語版のみ)をご覧ください。

WBDRに参加することで、血友病患者さんは、この重要なリソースの構築および世界におけるこれからの血友病治療の向上に積極的な役割を担います。あなたが、血友病患者さんまたはその介護者で、WBDRへの登録に関心がある場合には、参加についてHTCにお問い合わせください。

WBDRデータ

The WBDR database was developed through a collaboration between the WFH, the Karolinska Institute, and Health Solutions.

WBDRは、2018年に最小のデータセットで開始され、2019年3月に拡張データセットがデータベースに追加されました。さらに、WBDRには5つの機能スケールとQOLスケールが含まれています。

WBDRに保存されているすべての患者情報は、匿名化され機密情報として扱われます。ヘルスソリューションズ(Health Solutions)のデータポリシーガイドラインは、CE(Conformité Européenne:欧州適合)マークと英国のIGSoC(Information Governance Statement of Compliance)基準の双方を遵守しており、EU一般データ保護規則(GDPR)に準拠しています。

WBDRの2021年データレポートには、37カ国86施設のHTCから得た9,000例を上回る患者の人口統計データや臨床データが含まれています。プレゼンテーション、出版物、その他の研究資料でWBDRのデータをご使用になる場合は、WFHのクレジット表記をお願いします。

HTCサポート

WFHは、HTCが質の高いデータを収集しWBDRデータを用いて調査研究が行えるよう、3つのWBDRプログラムを提供しています。

WBDRは、包括的なデータ品質認定(Data Quality Accreditation:DQA)プログラムを提供しています。このプログラムには、堅固なデータクリーニングや検証プロセスが含まれており、これによりデータの完全性、精度、整合性が強化されています。WBDRのデータ品質チームはすべてのHTCと協力して、収集されたデータの品質に関するトレーニングやフィードバックを行っています。

WBDRのデータ品質レベル

WBDR研究支援プログラム(Research Support Program:RSP)は、WBDR HTCが意欲的にWBDRデータを収集、分析、利用できるようデザインされています。データ収集経験に乏しい国々がWBDRに参加することで、データを調査や権利擁護支援に活用するよう働きかけることを目的としています。

WBDR HTC資金援助プログラム(HFP)は、低所得国および低中所得国のWBDR HTCに資金を提供し、データ収集活動を支援するためにデザインされています。このプログラムは、HTCに対し、患者登録および入力データの品質と完全性の向上を支援することを目的としています。

よくあるご質問(FAQ)

ご質問がある場合には、WBDR FAQをご確認いただくか、[email protected]にお問い合わせください。

WBDR研究支援プログラム

HTCによるWBDRデータの解析・利用を支援

WBDR HTC資金援助プログラム

参加HTCのデータ入力作業に対する資金提供

2021年WBDRデータレポート

参加国の人口統計データと臨床データをまとめた年次報告書

感謝の言葉

データの共有にご賛同いただいた出血性疾患患者のみなさまへ:世界中の出血性疾患患者さんにご提供するケアの質を高めることにご協力いただきありがとうございます。   WBDR HTCのみなさまへ: WBDRのデータ品質基準を満たしていることを確認するためにご尽力いただいた、参加HTCで専心いただいたスタッフのみなさまに感謝いたします。   WFHは、このような重要な取り組みを継続するために寛大な資金提供をしてくださった出資者のみなさまに感謝いたします。WBDRは、以下の団体からの資金提供により支えられています。
ビジョナリー・パートナー
提携パートナー

遺伝子治療レジストリ

遺伝子治療レジストリ(GTR)は、遺伝子治療を受けた血友病患者(PWH)の長期データを収集するためにデザインされた前向きかつ観察的な縦断レジストリです。   遺伝子治療は、血友病に対する新たな治療法であり、今後が期待されています。臨床試験では、遺伝子治療により導入後少なくとも5〜8年間は出血が減り、凝固因子製剤の使用が抑えられるという効果が認められています。ただし、最初の臨床試験プログラムが終了した時点では、長期安全性、有効性のばらつきや持続性に関する未解決の問題が多く残っていました。遺伝子治療の長期安全性や有効性をモニターするには、生涯にわたる患者の追跡調査が極めて重要です。   GTRの主な目的は、血友病患者に対する第VIII因子および第IX因子遺伝子治療の長期安全性を検討することです。第2の目的は、血友病患者に対する第VIII因子および第IX因子遺伝子治療の長期有効性と効果持続性を検討すること、および遺伝子治療後の長期QOLや疾病負担を評価することです。
データは、以下のいずれかの方法でレジストリに記録されます。  
  • 参加しているHTCから直接
    • 血友病患者に対して遺伝子治療を実施するすべてのHTCに参加を呼びかけます。遺伝子治療を受けた血友病患者が追跡調査のために来院するHTCに参加を呼びかけるか、あるいは追跡調査の実施施設で収集した患者データを、遺伝子治療を実施するHTCに送るか、いずれかの方法でレジストリに組み込みます。
 
  • 明確な基準を満たし、以下を確保できる各国の既存血友病レジストリからのデータ転送/リンクを介して
 
  • WFH GTRのコアデータセットと同一/類似のデータフィールドの収集
  • 用語(特に有害事象に関する用語)の統一と標準化
  • 既存レジストリ以外でのデータの二次利用に対する患者の同意
  • 徹底的なデータ品質管理の実施と高品質なデータ
  • 血友病患者の重複の回避
    所属するHTCまたは国が遺伝子治療レジストリへの参加に関心をお持ちの場合、[email protected]にお問い合わせください。
データ品質プログラム WFH GTRには、包括的なデータ品質プログラムが含まれ、これはGTRに入力されるWFHGTRの全データに適用されます。データはすべて以下のデータ品質次元で評価されます。  
  • 完全性
  • 精度
  • 適時性
  • 原資料の検証

遺伝子治療レジストリ(GTR)は、以下の団体から資金提供を受けています。

資金提供ビジョナリー・パートナー
提携パートナー

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Relevant resources

Resources from the Global Policy and access summit 2021

Other Resources

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

Spain - Madrid

Year of IHTC designation: 2018

Hospital Universitario La Paz

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Spain - Valencia

Year of IHTC designation: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and Social services

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Blood banking
  • Orthopedic care and surgery
  • Physiotherapy
  • Diagnostic assessment of platelet functional defects

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hemostasis
  • Molecular genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and social services

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis (not genetics)
  • Nursing
  • Psychology
  • Social services
  • Orthopedic care and surgery

Austria - Vienna

Year of IHTC designation: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Areas of Specialty

  • Adult hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Centre

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Dental care
  • Blood banking
  • Psychology
  • Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy
  • Dental care
  • Orthopaedic care and surgery
  • Laboratory diagnosis and genetic diagnosis
  • Nursing
  • Psychology
  • Social services

これまでの経緯

WFHは、重症血友病A患者であるカナダの実業家フランク・シュナーベル(Frank Schnabel)によって1963年に設立されました。シュナーベルは、患者団体が協力することでさらに効果的に、すなわち出血性疾患患者の利益を代表するためにもっと多くの活動ができると考えました。1963年6月25日にデンマークのコペンハーゲンで第1回WFH世界会議が開催され、12カ国の代表が出席しました。現在、WFHとNMOの世界的ネットワークは、147カ国の血友病その他の遺伝性出血性疾患患者の利益を代表しています。

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Blood banking (on request)

United Kingdom - London

Year of IHTC designation: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy
  • Molecular genetics
  • Psychology/Social services

United Kingdom - Manchester

Year of IHTC designation: 2008

Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • National Hemophilia database

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • Physiotherapy/Occupational therapy

United Kingdom - Sheffield

Year of IHTC designation: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics

Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

WFH President's Award - Recipients

Hemophilia of Georgia

Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.

National Hemophilia Foundation

The National Hemophilia Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.

Legacy Gift

Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.

Download these sample clauses to give to your legal advisor.

We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].

Disclaimer

The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.

Website privacy policy

The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.

Use of links

Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”

Use of text and images

All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.

The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

Opt-Out or Change Your Contact Information

Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.

Questions about our policies

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].

Fraud alert

Unauthorized solicitations – Warning

The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.

Light it Up Red landmarks

Argentina

Buenos Aires, Argentina Planetario
La Torre Monumental
Monumento Plaza Congreso
Palacio Lezama

If you’re aware of a landmark that is lighting up red for World Hemophilia Day 2022 that is not on this list, please forward the official confirmation from the landmark to [email protected] to have it added to the list. 

International Award for Outstanding Service - Recipients

International Lifetime Achievement Award - Recipients

Previous years

2012Christine Lee
United Kingdom
2006Dr. Bruce Evatt
United States

International Healthcare Volunteer Award - Recipients

Previous years

2012 Piet de Kleijn
The Netherlands
2010 Dr. Mammen Chandy
India
2008 Dr. Man-Chiu Poon
Canada
2006 Dr. Norma de Bosch
Venezuela
2004 Dr. Parttraporn Insarangkura
Thailand

Dr. Carol K. Kasper
United States

United States - Chapel Hill, North Carolina

Year of IHTC designation: 1972

University of North Carolina Hemophilia & Thrombosis Center

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Nursing
  • Physiotherapy/ Occupational therapy
  • Psychology/ Social services

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

United States - Houston, Texas

Year of IHTC designation: 2000

Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy/ Occupational therapy
  • Psychology/Social services

United States - Los Angeles, California

Year of IHTC designation: 1970

Orthopaedic Hemophilia Treatment Center

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physical therapy
  • Psychology/Social services

United States - New York, New York

Year of IHTC designation: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Molecular genetics
  • Social services

United States - Rochester, Minnesota

Year of IHTC designation: 1974

Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Blood banking
  • Molecular genetics
  • Psychology/ Social services

United States - San Diego, California

Year of IHTC designation: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Areas of Specialty

  • Adult hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Twins of the Year Awards

2019 Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands)
2018 Abidjan (Ivory Coast) – Brussels (Belgium)
2017 Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016 Kampala (Uganda) – London (UK)
2015 Varna (Bulgaria) – Bonn (Germany)
2014 Arequipa (Peru) – Los Angeles (USA)
2013 Davangere (India) – Liverpool (UK)
Ludhiana (India) – Detroit (USA)
2012 Hanoi (Vietnam) – Melbourne (Australia)
2011 Manado (Indonesia) – Utrecht (Netherlands)
2010 Delhi (India) – Winnipeg (Canada)
Yaoundé (Cameroon) – Geneva (Switzerland)
2009 Chisinau (Moldova) – Warsaw (Poland)
Colombo (Sri Lanka) – Vellore (India)
2008 Gaborone (Botswana) – Philadelphia (USA)
2007 Vientiane (Laos) – Brest (France)
Damascus (Syria) – Montpellier (France)
2006 Lima (Peru) – Fort Worth (USA)
2005 Yerevan (Armenia) – Minneapolis (USA)
Casablanca (Morocco) – Caen (France)
2004 Beirut (Lebanon) – Geneva (Switzerland)
Santo Domingo (Dominican Republic) – Caracas (Venezuela)
2003 Cairo (Egypt) – Knoxville (USA)
2002 Moscow (Russia) – Liverpool (UK)
Panama – Valencia (Spain)
2001 Bangalore (India) – St. Louis (USA)
2000 Pune (India) – Bradford (UK)
1999 Montevideo (Uruguay) – Buenos Aires (Argentina)
Tianjin (China) – Calgary (Canada)
1998 Plovdiv (Bulgaria) – Bonn (Germany)
1997 Bogota (Colombia) – Los Angeles (USA)
Tartu (Estonia) – Stockholm (Sweden)
1996 Timisoara (Romania) – Munich (Germany)
Riga (Latvia) – Munster (Germany)
1995 Klaipeda (Lithuania) – Malmo (Sweden)
1994 Bratislava (Slovakia) – Tel Hashomer (Israel)

Pietrogrande Prize

2021 Axel Seuser
Germany
2019 Dr. Adolfo Llinás
Colombia
2017 Pamela Hilliard
Canada
2015 Kathy Mulder
Canada
2013 James Luck
United States
2012 Piet de Kleijn
The Netherlands
2011 Dr. Lily Heijnen
The Netherlands
2010 Dr. Horacio Caviglia
Argentina
2009 Jerome D. Wiedel
United States
2008 Dr. Federico Fernández-Palazzi
Venezuela
2007 Michael Heim
Israel
2006 Brenda Buzzard
United Kingdom
2005 Dr. Marvin Gilbert
United States

Henri Horoszowski Award

2021 Baolai Hua
Yangzhou College, Xuzhou Medical University
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019 Maarten Eerdekens
Belgium
Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy
2017 Fabio Souza
Brazil
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015 SM Javd Mortazavi
Iran
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013 Lize F.D. van Vulpen
United States
A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components
2012 Horacio Caviglia
Argentina
Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients
2011 Nick Goddard
United Kingdom and
Monique van Meegeren
The Netherlands
Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro
2010 Lydia Abad-Franch
Spain
Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac
2009 Sebastien Lobet
Belgium
Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables
2008 Jose Alberto Tlacuilo-Parra
Mexico
Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia
2007 Natalie Jansen
The Netherlands
Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage
2006 Axel Seuser and E. Kusch
Germany
Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia
2005 Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders
The Netherlands
The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities
2004 Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber
The Netherlands
Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study
2003 Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman
Germany
How to advise young haemophiliacs to find the right sport? A new and safe algorithm
2002 James Luck, Jr. and Mauricio Silva
United States
Long-Term Review of Total Knee Arthroplasty
2001 Federico Fernández-Palazzi
Venezuela
Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses
2000 Horacio Caviglia
Argentina
Pseudotumours
1999 William J. Ribbans and J.L. Hicks
United Kingdom
Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century
1998 Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero
Colombia
Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis

International Frank Schnabel Volunteer Award - Recipients

Previous years

2012Martha Patricia Monteros Rincon
Mexico
2010

Antonia Luque de Garrido
Venezuela

2008

Jean Michel Bouchez
France

2006

Yuri Zhulyov
Russia

2004

Ashok Verma
India

Find a Treatment Centre

Find a WFH national member organization (NMO)

Quality of life scale

The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.

If you would like a different language, please email us at [email protected].

Other available languages include

Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)

Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese

For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about.

Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

WBDR data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.

WFHのビジョンと使命

「Treatment for All(すべての患者に治療を)」というWFHのビジョンは、出血性疾患の種類、性別、居住地にかかわらず、すべての遺伝性出血性疾患患者が治療を受けられる世界を目指すことです。私たちの使命は、世界中の遺伝性出血性疾患患者に対する治療を維持向上させることです。